Hi All,
U will probably know me from the the Ho Hummers!
I Have been dx with a brain tumour that is linked 2 my breast cancer…
They also think I have liver involvement but will know for def in the morning!!
The tumour is 2cm dia and pressuring on my cerebal spinal column…
Has any1 got any experince, advice help…
I am really scared, dont know what 2 expect…
So 2 go on
Hugs
Mel
xx
Hi Mel, I remember you posting before, you had all that trouble over liver mets diagnosis didn’t you, or have i got the wrong person?
I am so sorry to hear about your most recent diagnosis, breast cancer is just sh… I hope some of the other users who have a similar diagnosis will come and offer you some good advice.Love and best wishes Claire
Yep its me!! I still have a ? over the liver, this is just another blow… I hope some one can advice me!
xx
Hi Mel
Just wanted to send u big hugs and hope u get some answers tomorrow. I cannot believe you are going through all this crap again. I thought after last years fiasco your life was getting back to some sort of normality.
Hope Les and the kids are OK, and am here for you whenever you need to talk, rant or scream or cry. Call me either on mob or home if you need to.
Take care my darling and hoping for some good news.
Lots of love
Dawn
xxxx
Hi Dawn,
Kids know something is up! And Anneka has asked if the C is bak & how long I would be in hospital for! I could answer…
Les is in bits inside, always red eyed but wont show his emotions. Not sure what 2 do there!
Hope you are feeling well hun
chat soon!!
xx
Hi Mel
I am sorry to read about your new diagnosis, if you feel it would help to speak to someone in confidence please call our helpline on 0808 800 6000, the line is open Mon-Fri 9-5 and Sat 9-2.
Take care
Lucy
Hi
Well D day tomorrow! I get my MRI Scan results & I’m worried what the outcome will be…
I hate the idea of being on pallative care again specially all the mix up on the liver mets & getting over that!
I am not sure I can cope with my DX.
Whta does having Brain cancer mean - ok no more driving!o independant I hate that idea. Hubby on edge kids bickering cause hubby is not coping & I am just trying 2 get on with it and dare I say laugh at it! I cant cry anymore.
I am worried as I have not found many people on here that have Brain mets - is that a good sign or not! not sure.
Well mixed up! I just have so many questions, I have had Fec x6 Taxotere x 5 & 17 cycles or herceptin - why did it not work! Am I just unlucky!
So 2 rant but not sure what else 2 do or who will listen at my rsnting
grrr
better go kids started
x
Mel,
I don’t have a brain tumour but have cancer in the meningeal layer which is too near the brain for my liking. I have just (yesterday) completed a 6 weekly intra-thracal (i.e. lumbar puncture) course of chemo - methotrexate. I am having an MRI scan of head after Easter to see if it has worked.
I also seem to be getting lumps in skull, I have had pimple-like swellings in various places on scalp before, but that was in skin rather than skull itself.
Its pretty scary having stuff happening around the brain. I wonder if it is that women are surviving secondaries longer that more is being done to treat spread to brain these days. Even so as you say there seems less posts about brain involvement than bones/liver/lungs (which I also have for good measure!).
I do hope you get on ok tomorrow and that you get some answers to your questions.
Irony is that it is my hip that is giving me real pain at the moment, typical that this happens just before Easter hols, I am off to Cornwall for a week. I will be asking for rads to hip if this pain goes on…
best wishes,
Lottie
Good luck for tomorrow Mel. Will be thinking bout you all day. I hope that you get some decent news out of all this, if that makes sense. Cant say good news, cos its all shite!!!
Wish I could come and hold your hand and be there with you, but willbe in spirit. Hope Les and kids are OK and that they helping you out loads.
Take care honey, and please text me or something and let me know how it all goes.
Lots of love and hugs
Dawn
xxxx
Mel
So sorry to read this, I can’t believe you are going through this after all the strain with possible liver mets last year. You have been through so much and now you have to cope with this. There have been some really helpful posts about brain mets over the years about what to expect with treatment - and there have been some people who have recently been treated, I am sure that they will come along and post soon.
I hope tomorrow gos OK or as well as it can - please let us know how you get on , there is alot of support here on this site to get you through things.
cathyx
Thoughts are with you, hope today has given you some comfort. XX
Well got through onc appt day!
Thankfully there is just the one tumour! They can operate but like everything there are risks - I could loose my mobilty in my legs because the lump is sitting in a really awkward spot?? But I must go 4 it I think… Does not everything come woth a risk - Life?
Anyway my next dilema is when it will happen - they dont think they can remove it because of appointmets etc for a month - A MOnth!! OMG surely if it is v.agreesive it is a priorty! Beggers belief I’m 36!!
So I will be contacting my Onc today about trying 2 go private 2 get 2 see the Brain surgeon guy early - do you think Im being stupid??
Wwe have some saving & parents and everyone else has offerd to rally round but I just want your opipions… does anyone have any experience of private meds? I know its not going 2 be cheap but I am worried that 4wks is a long time 2 be doing nothing and I mean they nothing!! They are keeping me on these lovely steriods as a short term solution! I have had so much chemo, herceptin and in such a short space of time this happens - how? so my ? is what can happen in another 4wks
OMG I have ranted again - so so sorry guys
Steriods grrr 
xx
Keep ranting Mel! Also, keep pushing for early surgery cause apart from the nature of the tunour, it is having a devastating effect on you and your family. You shouldn’t have to go private. One other bit of advice that you may want to take, find the name of the trust chief exec and write to him/her for help, explaining the distress you and your family are feeling. It will probably be lodged as a complaint but you have nothing to lose.
Sometimes, hospitals really can’t make things happen as they all push for theatre time but I think the buck stops with the theatre manager to make the time. I had to do this just to speed up the op that made it official that I had a cancer diagnosis and needed to start treatment asap. A mac nurse advised me to do it.
The only bad thing is that it may only bring the op forward by a week or two but they will not dare cancel it then.
Anne
I only know that when I had spinal chord compression, my nhs medics had me mri’d, and operated on within 5 days. I know what you are saying about aggressive cancer but is the problem rather that they do not see an immediate need over having to wait for theatre/surgeon time? Like you I would very much see an immediate need, but it may be clinically they do not see that 2/3 weeks will make the difference.
Like others have suggested I would do all I could to push the date forward, and if writing a complaint helps then so be it.
This is a terrible time for you trying to manage it all, and manage yourself too, and it is always frightening when this canceer goes anywhere near the brain, but Ialso have seen many women on here with that diagnosis who still seem to enjoy reasonable health for a long time. I am sure that other women who have this diagnosis will come along and hopefully their stories will be reassuring.
Take care
Mel
I would put the time and effort into doing a few things that you want to do now, and pushing hard for an earlier date.
Do you have a really pushy relative who can advocate for you as well (like my mother…) someone who could do some of the calling round ? I think it would cost well over £10,000 to get this done privately and in the end you might only advance it a week…a week to get the right appointment, new scans (they would insist on new scans plus results to them) plus 10 days to fit into the surgeons diary - these are NHS doctors who are operating one day a week privately- so my guess is that you would end up advancing it one week.
This is terrible for you, I dont think they understand the extreme psychological distress that we suffer waiting for any sort of treatment. I dont have brain mets but I can guess how you feel here…please let us know how you get on.
Cathyxx
Hi,
Well
I have just come off the phone from the surgoens secretary, who was kind & appologectic, & did try & help! Well another spanner is he is on holiday this week - ok fair enough we all need our holidays!.
Next he only does Private Insurance patients on a priorty basis mmmm
then I offered 2 pay for the appt 2 b brought 4ward - I got well they are expensive - hmm life money = no brainer it will cost me £140 - I told her I would pay! she then goes on 2 discuss the pigeon hole & priorities = I am 36 healthy no other sign of invasion, hubby young kids am I being selfish - sorry! Anyway the next step is she is going 2 gather all my records from the NHS side and see where I am etc and phone me early part of next week! so yet another week will have 2 pass with this in my head! I feel so frustrated and angry and with everything going off at our local Hospitals who have already got an extremely tight budget and short staffed! the government need to live in the real world a little with no big pensions, or wages or payouts! Oh thats another thing Im fighting My hubb was made redundant on the 6th Feb 09 & we are still waiting for any money or help financially as he has also damaged his cartlidge in his knee so awaiting an MRI so he is claiming for a new type of benefit Employment Supporrt which the government target date is 15th Apr for it 2 b sorted, I was aked 2 phone back 2morrow if I have not heard anything so guess who will be on the phone again 2morrow! We have both worked all over lives hard! So lets see how the government reply when they want the council tax paying!!
OMG Ive done it yet again I have ranted big time Im so sorry if you have read this I must sound a right self absorbed person.
I hope everone is pk & hopefully having more of a fruitful time than me…
xx
Mel
x
OMG! I have got my pre-op planning appointment this Tuesday.
Apparently they have brought me forward as I am a good candidate Hmmmm… Oh & the secretary does not want 2 loose her supply her wine gums lol
Very very scared but thankful I have not got 2 wait long as for a decision as to what they are going to do!!
Thank you all for listening 2 my ranting
Hugs & well wishes 2 u ALL
XX
Mel
xx
You don’t sound self absorbed at all Mel, I think what you have had to put up with is disgusting to say the least!!! “Rant” away as much as you need to hun, totally justified!
You think as a person that you’ll be treated as a person not as an non priority number! That sucks!
Also understand about the financial situation aswell, I had to give up work 2 years ago to become carer etc, living on pretty much…well…not much at all, totally understand!
Hi Mel,just wanted to add my best wishes for your pre-op tests. Glad you are being seen earlier, you rightly say you are young and have everything to fight for!! Keep pushing Mel, all the best, claire x